I’m going to start this post with an affirmation, an affirmation for you…
What you are doing for the people you love is way beyond what you had ever imagined and certainly above the things you signed up for at the start of their lives or when your commitment to a partner was made, these are the loved ones you are caring for. You are doing great things, amazing things in the face of a seemingly “unstoppable force” that is known simply as an eating disorder. Succinctly put YOU ARE AMAZING!
Now smile, take a deep breath and relax a little as we travel on a journey together. We gain support and confidence in knowing we are not alone, we have travelled already from a dark, lonely place in to the light by just finding this group and sharing our experiences. It’s freeing just being able to talk about things with people who are also on the journey, each of us in a different place.
There were some very big emotions conveyed in the room last night and both Jenny and I would love nothing more than to be able to give you a big hug. We need to remind everyone that there are other support groups and charities out there who can support you in your journey too that may be more accessible for you.
Each of these organisations provide support to people supporting a loved one through an eating disorder (ED). A number of times during our time together last night we talked about self-care and the importance of self-care. The analogy of the aircraft oxygen mask is often used as the instruction is…
“Should the cabin lose pressure, oxygen masks will drop from the overhead area. Please place the mask over your own mouth and nose before assisting others.”
This is because you can’t possibly help others if you can’t breathe yourself. It is the same with caring for anyone else, be it an eating disorder or any other form of caring. So please, care for yourself so you can effectively care for your loved one, it is the most important thing you can do, for you… I have attached a poster, “50 ways to take a break” for you to print out and put somewhere you see it every day and can think about how you are going to achieve a break. Even 5 minutes a day will work wonders for you. You will also find attached the “Carer Wellbeing Toolkit”
During the evening we touched on quite a few subjects, all important and I will refresh some of the points here.
With counsellors and therapists etc. you will need to find one that works for your loved one. You may need to try a number of different ones before you can settle on who this might be. The main thing, in my opinion, is that when choosing a therapist etc. it is about engagement, that your loved one will feel able to participate in the sessions and how they will benefit from them the most. You can find a list of counsellors and therapists on Jenny’s website https://newmaudsleycarers-kent.co.uk/local-counsellors/ these are based largely in Kent but most now do remote work due to the pandemic. As with all professional help, it is important to find support that has specific experience of EDs. This goes of GPs too. You can ask for appointments with a GP that has specific ED experience, unfortunately not all GP practices have a doctor with this kind of experience. But if you don’t ask…
Another thing we picked out from the evening was affirmations. Affirmation is important and needs to be more than just… “Well done for eating your cereal bar” We need to pull out an understanding and appreciation of the challenges that were faced by the act of eating the cereal bar. We could start off with “name your loved one – eg Millie,” always address the person, “I know this is hard for you” this tells them you recognise the challenge they have faced even picking the cereal bar up, next “I think you are drawing on all your resources of courage and determination and making great progress with your snacks” this tells Edi that you have noted the effort and advancement they are making, next we could say “you are taking responsibility for your own health and it’s great that you can now eat your snacks without me having to nag, I am so proud of you.” This is an example of how to craft an affirmation and I hope that it makes sense and you can see how important it is to address the person, not the illness and recognise their challenge and the success that has just taken place. There is more details in the attached capsule.
There was some talk about autism and EDs which led to a discussion about the Zones of Regulation [ZoR] (which I had not come across before) but I have taken a look and found the attached poster that is one form of the ZoR from an autism website. You may find it helps certain situations particularly if you are able/want to craft one for your loved one’s specific needs. (Zones of regulation is a framework to foster self-regulation and control. There are four zones: Red is an extremely heightened state eg terror, rage, anger; Yellow is still heightened eg anxiety, frustration; Green is a calm state, where optimal learning occurs. Blue is a low state eg sad, sick, tired; 7. For example, your loved one might be able to describe to you which foods feel safe, which foods lead to heightened anxiety, and which foods lead to extreme terror. The very act of eating a meal might lead to a low state with feelings of sickness and exhaustion. Over time your loved one might feel empowered to try more foods in a series of experiments so that over time she learns to self regulate previous automatic negative responses – more foods eventually move into the green zone )
When supporting a loved one with an ED you need to remember that you cannot take massive strides towards an end goal. This is not an illness that you can “fix” with a simple therapy or drug that will manage the condition. This is in most cases, a long process of behavioural experiments, taking baby steps. You can find in each little step is a success story waiting for you to recognise and, if you look you will find that diamond, that reward that tells you that you are going the right way. Even when there are setbacks there is still an important nugget of learning – what went wrong and what could we do differently next time? Jenny told us of the story about the lad who gained 1Kg a month for 40 months. Slow and steady progress. He achieved his goal of gaining 40Kg and is now fit, healthy and fully recovered. We say, that if you are doing something and it’s working, then do more. If you find it’s not working then try something else.
Please let me encourage you to keep trying, to persevere, to experiment, to love and to tell it out loud.
There are some capsules that are to view that Jenny feels will be useful post our meeting. They all include references to lockdown situations families have been facing. Please click here to view.